Personalized medical information card for adults with 22q11.2 deletion syndrome: An initiative to improve communication between patients and healthcare providers.

COMMUNICATION; PEOPLE with intellectual disabilities; PHYSICIAN-patient relations; INFORMATION needs; 22Q11 deletion syndrome; DESCRIPTIVE statistics; ADULTS

Background: Many individuals with intellectual disabilities and their caregivers struggle to provide accurate and complete information to healthcare providers. Method: The present authors provided personal medical information cards (PMICs) containing contact and medical information to 52 Canadian adults with 22q11.2 deletion syndrome, a genetic condition associated with intellectual disability. The authors invited them and/or their caregivers to complete a user satisfaction survey concerning usage of the card. Results: Forty‐eight (92%) patients or their caregivers completed the survey. Twenty‐two (46%) respondents used the PMIC over a median of 8 months during encounters with doctors and other professionals, and a majority of these used it more than once. Users reported finding the PMIC "very helpful" (86%) or "helpful" (14%), providing necessary information, speeding up interactions with professionals and helping avoid repeat storytelling. Conclusion: Providing a PMIC to individuals with intellectual disabilities and their caregivers could help improve patient safety and assist in advocacy. [ABSTRACT FROM AUTHOR]

Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)